← Return to Sjögren’s Syndrome: how do you manage the symptoms?

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@mothermary1

Hi, I suffer many of the dry eye,dry mouth swallowing issues. Numerous Gastro docs but the eye dryness was severe causing a lot of problems. My eye doctor about a year ago did a test to see if I sleep with my eyes open and I do. Not completely, but enough to make them even more dry. It’s called nocturnal lagophthalmos. After any procedure or surgery I would always wake up with corneal erosion in both eyes. It’s so painful. So I need to paper tape my eyes when I sleep, have surgery, or a procedure that puts me to sleep. It helps but never full relieve. I recently am trying Autologous serum drops. They draw four tubes of your own blood, centrifuge and I believe remove red cells. They add a salt saline solution to your own serum. It cost 300 dollars for the blood draw at the eye doctors office and typically you get three containers of eye drops. I had to freeze two and one stays in the frig. I put four drops a day in each eye. It’s been just two weeks so I’m not going to give an opinion just yet. I was spending a lot on drops for daytime and gel for my nights. This comes out to 100 monthly and if it works I’ll be thrilled. I return in three months about one week before I run out. I waited about 45 minutes after they drew my blood to get the drops. Google it to get a better understanding. Also, I was very surprised to learn how many people sleep with their eyes open. Hope this helps you. I’ll update at end of my three months. I know that these drops are offered just about everywhere.
Best of luck,
Joanne

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Replies to "Hi, I suffer many of the dry eye,dry mouth swallowing issues. Numerous Gastro docs but the..."

Good luck Joanne,
but i dont sleep with my eyes open. my dry eyes didnt start uuntil several months ago. months after my dry mouth started. i was prescribed restasis but couldnt afford it so i just use systain 3x a day a use warm compresses 2x a day if needed.